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t (4:14) chromosome patients, how are you?

by kjpoppit on Wed Sep 25, 2013 3:11 pm

I just learned I have the t (4:14) chromosome involvement with my myeloma. Please tell me how you are doing and what treatment you had. Looking for a spark of hope for a longer period of survival. I will need to be deciding what my treatment options are.

kjpoppit
Name: Kim Nelson
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept. 19th, 2013
Age at diagnosis: 47

Re: t (4:14) chromosome patients, how are you?

by Norm on Wed Sep 25, 2013 4:02 pm

I, too, have the t(4:14) chromosome abnormality. My treatment was 5 rounds of Revlimid & Dex followed by an Autologous Stem Cell Transplant in March 2011. I've been on small dose of just Revlimid since then as a maintenance therapy. Also, I had two years of Zometa (bone strengthening) infusions. I've been in complete remission since the stem cell transplant. Other things I've read lately suggest using Velcade as a starting therapy if you have the t(4:14). Mayo considers the t(4:14) as an intermediate risk factor. Bottomline, I've had multiple myeloma for three years following diagnosis and am still going strong with a complete remission, now at age 63.

Norm
Name: Norm
Who do you know with myeloma?: me
When were you/they diagnosed?: Aug-2010
Age at diagnosis: 59

Re: t (4:14) chromosome patients, how are you?

by Russ on Wed Sep 25, 2013 4:24 pm

kjpoppit,

I was diagnosed with a t(4:14) back in February, 2011. My induction therapy was RVD. Had a complete response and then went ahead and had a transplant. Did 4-cycles of RVD as consolidation post-transplant (just to be safe), and am in the middle of a 2 year maintenance regimen of Revlimid and Velcade. I have been blessed, and am still going strong.

Be well and keep up your hopes,

Russ

Russ
Name: Russ
Who do you know with myeloma?: Me, Myself, & I (and a few others)
When were you/they diagnosed?: February 2011
Age at diagnosis: 41

Re: t (4:14) chromosome patients, how are you?

by Basketballmom on Thu Sep 26, 2013 2:15 pm

Hi. I was diagnosed on 27 of March 2010. I have the t(4:14) abnormality and was also classified as stage lll, multiple bone lesions, collapsed lung from pneumonia and very severe kidney disfunction. My M-prot was 120 Canadian measure (I think 12.0 American). I was only 42 at diagnosis with my youngest boy just 10. My family and I was floored. But it also explained all my symptoms for the last couple of years and meant that now I'll get the right treatment. Canada has strict protocals in each province that the Oncologists have to follow. First Velcade to bring M-prot down. Then prep for SCT and I had that done by July 2010 as outpatient in Vancouver General. No maintanance for 8 months after which the M-prot started climbing. Since then Ive had all the novel agents and even the good old Melphalan backup. At the moment Im feeling great but very tired. Still here though despite drs dire predictions. My CBC's are not great and M-prot at 59.6 but I still wake up everg day and enjoy the morning sunrise. I meet the day tired but happy. So many wonderful events and people have made my life full and happy. Many of my healthy friends wish they could be as joy filled as I. Blessings to all of us.

Basketballmom

Re: t (4:14) chromosome patients, how are you?

by Anna77 on Sat Sep 28, 2013 7:54 am

I was diagnosed with myeloma IGA plus t4:14 June 2010 and was told how aggressive it is.

I originally was treated with Thalidomide, Dexamethazone & Cyclophosphide. This drew my level down a bit from 23 to 15 then stalled.

I then went on to Velcade, Dexamethazone & Cyclophosphide for 4 months but this too was not that successful.

I then had the stem cell transplant and had a reading of 4 and remained "in remission" for about a year when the levels started to rise.

In January 2013 it was suggested that I would probably have to start the next course of treatment in March as my level was going up so quickly. The new treatment would probably be Revlimid etc.

Then read in an older "Myeloma Beacon" about curcumin so thought I would have nothing to lose if I gave it a go. It could be a coincidence - but it would appear that result of this has been that my level has only gone up slightly and I am at present on a plateau and I have had no further treatment so far. I am now also looking at altering my diet as well.

Anna77

Re: t (4:14) chromosome patients, how are you?

by PBD on Wed Oct 16, 2013 3:28 pm

I was diagnosed in Feb. 2012 with smoldering multiple myeloma with t(4:14) chromosome. No treatment was recommended. I felt uncomfortable watching and waiting so I began taking Curcumin. After a period of time on the recommended dosage I began to develop hives. I stopped with the Curcumin and have been taking Ip6 with inositol for more than a year. My M spike has been going up slowly but remains below the conventional treatment level and no signs of CRAB. (my Hgb is slowly falling). My Dr. has continued to be against what I'm doing but continues to see me.

PBD

Re: t (4:14) chromosome patients, how are you?

by DanaH on Wed Oct 16, 2013 4:07 pm

Hi PBD,
Does your doctor (or you) attribute the slow increase in your m-spike to the IP6/inositol ? Do you or your doctor feel it is "slowing" it down or just contributing to the overall increase? Have you tried eliminating the IP6 for a few months to see how you do without it ?
All the best to you,
Dana

DanaH
Who do you know with myeloma?: Myself, SMM as of 1/2012
When were you/they diagnosed?: 1/2012
Age at diagnosis: 54

Re: t (4:14) chromosome patients, how are you?

by torimooney on Wed Oct 16, 2013 11:06 pm

I was diagnosed with T (4:14) abnormality in April 2012. My LA specialist said not to worry since the T 4:14t was only in 6% of the cells tested. I had 50 % plasma cell involvement on BMB. I began treatment in Oct 2012 and after 8 rounds of Doxil, Dex and Velcade I achieved a
0 m spike. I am now on maintenance of Dex and Velcade. ....doing well . No plans for a SCT.

torimooney
Name: tori
Who do you know with myeloma?: myself
When were you/they diagnosed?: apr 2012
Age at diagnosis: 64


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